Saturday, July 31, 2010


this is the end of my blog. i think i'm done with writing and/or thinking about my body, because instead of providing an outlet for venting frustration, it increases frustration, makes me a crazy hypochondriac and causes extreme anxiety over what the future holds. and i didn't get the transplant so i could live less, i got it so i could live more and live better. the past month has admittedly been the most depressive, anxiety-ridden month of my life, and i'm ready to move on. good things are coming. thanks for reading.

i leave you with a link to this inspiring fellow:

Monday, July 26, 2010



Tuesday, July 20, 2010

in no particular order

-got my staples out, didn't hurt
-got the jp drain out, weirdest sensation ever, like a snake being pulled out of a part of your body you didn't know existed
-there's a goddamn piano in my bedroom! as of this afternoon. so awesome.
-i went to a pool party at my aunt's this past weekend, spent time with jackie and chris, my dad and my dad's side of the family. first real outing since the surgery; it was very nice.
-i have $460 in food stamps. the possibilities are overwhelming. which is good, since i can't stop eating.
-blonde redhead is playing at the paradise in november, where dan, jackie, matt z and i first saw them in '07. one of the best shows i've ever been to. we're going to replicate that experience.
-i think i have a crush on / affectionate appreciation for my 40-something-with-two-kids transplant surgeon. he talks to me about books and poetry and his love of toy story, mostly. or maybe i'm just spending way too much time at the hospital, and he's the only male i've seen in a month that isn't my best friend or related to me. of course, it's also endearing that he saved my life. and that he encouraged me to go see inception without wearing a protective face mask.
-i can walk a little better every few days. i'm a little bit closer to being able to drive, and being able to escape the television, although now that i have the piano i think i can retire from the living room couch. i've happily gone four and a half years with no t.v., with the exceptions of last summer and now. i can't watch 95% of commercials/shows without making some snide sociological/feminist comment that probably irritates my mom.
gonna go2bed and walk better tomorrow.

Thursday, July 15, 2010


i haven't wanted to write in here because there's so much i need to begin to say and express that cannot be expressed in writing, not yet anyway. the week of my surgery exposed me to a kind of suffering i didn't know was possible (largely mental) and so was not expecting, which sounds overly dramatic but that's the only way i could perceive it at the time. after six days in the hospital, six days of not really moving at all, gaining 16 pounds of fluid in 3 days, hallucinating on myriad combinations of drugs and painkillers, my transplant surgeon came in one morning to see how i was doing and i started crying hysterically and told him i had "lost my fucking mind," so they sent me home, where i've begun to regain it/lose it less.

they had me on a heavy dose of steroids for a few days (used for antirejection). the steroids made me very angry. it's a terrifying thing because you know it's the drug but you want to kill people regardless and you can't (or i couldn't) rationalize my way out of it. being 90% physically paralyzed (i.e. unable to sit up in bed without assistance) and filled with rage is a weird combination, because all you can really do is writhe and cry and swear and pull your own hair, and then when you try to sleep you have the following dreams, which are unprecedented in their vividness:
1.) i'm in a video game, jumping down the floors of a very tall building, on the outside of the building, landing on slim ledges that extend from each floor. a friend is with me, jumping too, but he misses a ledge and falls many stories. when i reach the bottom, i find him, and he's alive but his skull has broken into many pieces inside his head. i hold his head in my hands and it feels like putty, and i try to piece the pieces back together, telling him he's going to be okay, lying, and he's staring into my eyes like he trusts what i'm saying, and then he dies in my hands.
2.) i'm sweating (in real life), so instead of waking up and removing blankets, i dream that i'm writhing in scalding sand in a desert, and then on blistering pavement in a city.
3.) i'm on the subway in boston, and there's an obese woman laying naked on the floor of the train. she has what appears to be ground beef oozing from her stomach at an alarming rate. nobody seems to notice. the oozing makes some kind of urban music, which is kind of enjoyable, but the enjoyable sound juxtaposed with the upsetting image makes for a highly unsettling feeling.

i also had one really nice dream though. i was performing at the flywheel with a homemade instrument. it was kind of like a harp but it was strapped to my chest, and it was really beautiful, black and silver, and the music in the dream was beautiful and lasted a long time. i had a boyfriend in the audience, and after the show we were walking through umass hand in hand back to our dorms.

i wrote this while i was in the hospital and on drugz:

not sure what to write about. it's 12:53 and i'm sitting up in a hospital room. in the reflection of the window i can see nurses pacing back and forth, sometimes. i feel like i don't know anything about the world. being here with a long scar across my lower abdomen and a little drainage tube protruding from my side. it fills with a pink fluid, the same fluid that makes its way through the stitching anyway, through the bandage, onto my bed. the nurse tells me when they get rid of the drain, they just pull it right out. "it'll hurt," she said. i can't even fathom this, i'm not sure why she told me this. if you could see it, see the hole it comes out of, it just seems like something that would be done in a saw movie. i've decided that i will never see a slasher movie again. i think they are inherently wrong, and i think that anyone who has ever been physically vulnerable/had surgery knows why. also, desensitization to violence, etc. real horror doesn't need blood and guts, appeals to something else. i've been in this bed since tuesday, about, with the exception of a few walks, trips to the bathroom. i feel like i've lost my mind. the nurse finds me in a stupor, hallucinating, says she's there if i need to talk, but there's nothing to say. what can i possibly say. a void where health should be is the most isolating place in the world. it's your own, single cell, and no visitor can attempt to fill it. you are alone in your body. i hate the drugs. i want the sun to rise immediately. night is like a death sentence. silence, darkness. i need to get out of here tomorrow. if i buzz for the nurse, i can hope that she'll arrive in half an hour. she'll give me a pill and i'll get empty rest, the kind of sleep that brings more restlessness. it's just a period between bridges, bridges that bridge more periods of healing and waiting to live. there is no way to not be completely and horrifically conscious. the tremors. something moves my head in my sleep; it's a surge of the drug, and my brain imagines a child out there, kicking me. i say to it: why would you do that? you keep kicking me, nudging me, sloshing me back and forth. something is radiating in me. what can i possibly say to a nurse whose eight hours is almost up. she brings me a tooth brush. my hair is grease. they give me a cartoon pamphlet called realistic expectations (for kidney transplant recipients). i don't understand. do they want you to be happy or conscious, do they want me to be optimistic or cautiously optimistic, because there is a difference. the very thought of food is greatly upsetting to every facet of my physical and mental consciousness. my sanity stares into the mean eyeball of the low bacteria hospital menu. everything sounds like scabs, scabs with salty condiments, scabs in the form of a low grade, low sodium meat, carbohydrate, a muted sweet, a pale vegetable scab. even the sight of the bottled water fills me with dread. can't cough, can't laugh. tried to laugh at something dan said, felt like there was a knife punishing me from the inside out. every angle of movement is calculated and plotted in advance, is braced for, every error accounted for, or attempted. every error is deeply significant. one small unexpected cough can fill you with a balloon of pain that leaves you groping for something i can't articulate. god, or something. in my flea market meditation book, there's a meditation called I AM NOT THE BODY. i have been chanting this at every turn. i am not the body, i am not the body when there are a dozen tubes coming and going, trafficking strange intravenous cargo. i am not the body when: i look down and see forty staples casting a half moon over my lower abdomen, when i consume thirty pills, when they pull the catheter from my neck and tell me to breathe deep. but at some point, i must confess that whatever i am is attached to the body, has a loose finger caught in its jar. if i just keep writing the sun will come up eventually. a few more hours now. i can sleep when it's light out, when people are awake. [end]

this experience has made me think about sick people, specifically about sick people who don't have support systems. it makes me feel deeply grateful, but in this gratefulness i feel like there's some culmination i'm not achieving. like it's not enough anymore to just be grateful, like i have to do something, because i can't stand the thought of suffering people not having support systems. it's a highly emotional kind of gratefulness, which i've never experienced before. i haven't been able to walk without being in a lot of pain, so i've been largely immobile since the surgery. so i've been thinking a lot about legs, too, about mobility and how incredible it all is. when i can walk again i think i won't sit down for a month. i had a dream two nights ago that i was running alongside cars on the highway, and it was the most exhilarating dream, and it was my subconscious responding to and protesting having to sit on the couch and watch america's got talent night after night. i've also become extremely grateful for other things. like, my roof. which sounds cliche, but i was always quick to not appreciate my house, because it's more like a trailer and less like a house, and it's in a crappy, embarassing park/neighborhood. but i fell in love with my house at 4am the other morning ago when it was thundering and i could hear the rain bouncing off the air conditioner dan has so generously donated and installed for my comfort, and i fell in love with it simply because i wasn't outside, and i also fell in love with the ugly gaping hole in the crawl space because i knew there were cats underneath my house staying dry.

i don't feel the need to complain about much of anything anymore (unless it's being in pain, or anticipating getting that drain tube thing pulled out of me next week) because i'm so happy to be in better shape than i was two weeks ago, and so happy to not be in a hospital room. before the surgery, i was concerned about all kinds of stupid things, like, will i gain weight after the surgery? will i be able to smoke the occasional joint? will i have a bump where the kidney is? i haven't gained any weight (i lost the 16 in less than a week), but i do have a weird bump that's noticeable when i lay flat, and i couldn't care less about that or the big scar i'll have. brad has informed me that i can brew marijuana tea (i can't smoke it anymore), although getting high is the last thing on my mind right now; i think being able to walk will be a high in itself. viewing the surgery as a second chance at a better life puts everything into perspective, and i hope that i'll retain this perspective even after i'm fully recovered. i hope that i'll continue to appreciate my family like i appreciate them now. my mom waits on me hand and foot, and jackie brings me movies and has taken time off work to bring me to my appointments in boston. and i can't even begin to articulate my appreciation for my dad, who has handled this whole thing so well and who never thought twice about donating his kidney. i'm just in awe of how lucky i am.

Saturday, July 3, 2010


i know things will get better. jackie did this really sweet thing a couple weeks before the transplant. she contacted some of my friends on facebook and had them send her letters/cards/words of encouragement via snail mail, and she brought them in to me yesterday, and it lit up my whole day. things can only get better.


i'm on perx in the hospital, tubes every which way, still can't really walk, feels like a fat man in a papoose is strapped to my chest. i've gained 15 pounds of fluid in four days. they have me on steroids for the first week to help prevent rejection. i don't know why they wait til night time to start the eight hour drip, because i started hallucinating and was hot and sweaty then freezing and very angry, couldn't move or find the nurse button, started yelling and then crying and the nurse came in and said oh, this is steroid psychosis. thanks for the memo. aka roid rage. she gave me a benzo and i woke up at 1:30pm. i need physical therapy to get me out of bed, i don't know where they are, they never come. no appetite. blood sugar too high from steroids, they have me on insulin. at night when the window is closed and it's dark i feel like i don't exist. i hate the television. i don't want my friends to see me. dan came last night and brought me a life sized cardboard cutout of the handsome vampire from twilight. he's been in the corner of the room because he scares the shit out of me and the nurses. dad is doing well, he went home today. i go home on tuesday, somehow. steroids are very, very terrible drugs.

Monday, June 28, 2010


well i have to get up at 4am and head to the hospital. for some reason i feel very nervous. when you're worried about something, you become hyper-aware of anything related to that something, thereby perpetuating the paranoid-ness. i guess a better word would be paranoia. i'm not superstitious, i think. but:

1.) the first thing i saw on the news today was a report on hospitals fucking up, specifically a woman's windpipe getting ripped open by the insertion of a breathing tube (which i'll be getting). her entire body became bloated with oxygen and she died.
2.) i got a letter in the mail last week from AARP, thanking me for requesting information about will-making, planning to leave my assets (LOL) to my loved ones, planning for funeral expenses, etc. i requested no such information, obviously, so this was creepy.
3.) i read craigslist missed connections sometimes, because they're alternately cute, poetic, disgusting, hysterical, etc. today someone posted something about death not being final, but rather being a portal to another dimension, etc. also creepy and not a missed connection.

in short it's easy to feel like the universe is reaching out to you in morbid ways when you're being subconsciously morbid. i might be a little superstitious. my chances of actually dying during the surgery are equal to the chances of a woman dying during childbirth. so, pretty slim. the risk lies primarily in the anesthetic, and that's what scares me. it's the idea that they put a needle in my hand, and then five seconds later i'm in a coma, breathing via a machine, and if i die, i won't even know it.

having said that, it actually helps immensely when people say "you'll do great." i was laying in bed last night at 3am and all i wanted to hear was a "you'll do great."

today i had lunch with brianne, and that lifted my spirits. she gave me stuff for the hospital: waterless shampoo (genius), chapstick, antibacterial wipes. it was very sweet. we're going camping in august down the cape, and this is the main thing i'm looking forward to. if i have the line out by then, i can even go swimming. the last time we went camping, we took a little blow up raft out on the lake under the stars. then shields got in the water naked and snuck up on us and tipped us over. it was awesome.

i think i'll do great.